Still a Type 2....Type Weird!

Yes, as with any drug there are some side effects from insulin. Hypos are one obvious one, but you can also have local and systemic allergic reactions, edema (swelling and retaining water) and weight gain. And some of the side effects can combine with other drugs to become potentially even worse, for instance TZD drugs also can cause edema.

But be assured, with careful use (i.e. dosing properly to avoid hypos) the side effects are rare and quite manageable.

I have to tell you, no test will tell you if you are type 2. Type 2 means they don't know what kind of diabetes you have. From what you say you have not been given a full panel of tests to identify whether you are T1 or not. There are blog posts by our fellow member Melitta which may be helpful in understand how to properly diagnose T1.

In the end, diagnosis is as much of an art as a science. Your endo could declare you a T1 based on his expert opinion even if it cannot be confirmed with a specific test. And make no mistake, in the end, getting an appropriate diagnosis of T1 can make a big difference with things like pumps and CGMs. There is a real and costly bias against those who don't have a specific diagnosis, those of us who are called T2.

Hi KimKat. Hugs to you and sorry for the hard time you are having getting a definitive diagnosis. Have you considered you may have a version of MODY. This is an inherited version of type 2 that often involves problems with the signalling mechanisms that alert beta cells to high glucose. There are various kinds of Mody, and some of the more common ones respond to sulfonylureas (which would whip up your working beta cells to produce insulin).

Now I have the simple diabetes (T1), so I do not have any useful experiences. Moreover a MODY diagnosis requires genetic tests that would be expensive unless you can get on a research study. The University of Chicago is big in this research, so it could be a possibility down the track.

If you have inherited MODY, people will be interested in any family history of diabetes. Does this occur in your family?

Yes, the dr mentioned the MODY to me when all the test for Type 1 were negative. She said I could check with my insurance to see if it is covered and than she told me where I can get the test. (That is where my dr is btw UIC Kovler Diabetes Center). She did say though that sometimes genetic test results not always mean anything and will not always be right.

All I know about my family history is that my maternal grandmother had diabetes and my grandpa gave her a shot of insulin everyday.. My mom either does not remember anything about it or they did not know anything else about her diabetes. She died from breast/bone cancer in 1973 and I was three so I don't remember her really. My dr was asking if she was overweight etc... I don't remember her being that but I seriously remember almost nothing.. I am not close to my family and we do not have the best relationship. But I was thinking of emailing her again and asking or maybe uncles and aunts might remember... I have asked her several times about grandma and she doesn't give me much info.

But how would a diagnosis of MODY make a difference in my treatment? I guess I am sort of at the point where I don't care what I am but just that I get what I need so I live properly again with some energy..

Aw! HUGS LilOne! I feel the pain. I have been through it.. Right I don't care what type I am any more.. Never may never be an answer. I could be some new form of diabetes they don't even know about. As long as I can get what I need to feel better that is what I want right now.

When I was first dxd I did a lot of research and I came across an article (why didn't I keep it? argh!) that mentioned there is another disease that mimics diabetes.. I think it began with an H... I wil have to google and see if I can find it.. Who knows maybe i have that? :)

Insurance is tricky for folks like us..I guess you need to proove Type 1 or 2 to get certain meds??

Thanks Brian! You have been very helpful!

Thanks Brian! I am pretty good at learning something and mastering it.. My work is about details so I sure I will get the hang of it..

Since I am only starting on Lantus 5 units at night, I am guessing I will not have to worry about carb counting since I will be sleeping? :)

Carb counting has two purposes, to guide your control of carbs at meals (which applies to anyone with diabetes) and to guide the amount of bolus insulin you take at meals. Since you will just be on a basal you don't need to count carbs for bolus calculation. But the hardest part of a full insulin regime turns out to be counting those carbs. It takes lots of learning and practice so you might as well start now.

Some people with MODY need insulin some don't, some do fine on some type 2 drugs, some don't. If ya have MODY it might help to figure it out and it might give you a better idea of what could work for you treatment wise. If you don't have MODY then you likely still are just a type 2, but it's really really sticky when it comes to diagnosing adults. If our dear friend Melitta would come join us in this thread that'd be great because she CAN Explain this really well...because I'm gonna be that person who suggests it's still not entirely impossible that you're a type 1 if the type 2 drugs aren't working quite as well for you. She kinda goes into it here with Idiopathic Type 1 diabetes but I've heard about type 1's that test negative for autoantibodies but are still type 1 . If you could find your previous C-peptide tests and if it went down drastically, that might be something to look into. Like if you continue to test negative for autoantibodies and are negative for MODY it might still somehow be type 1 especially if your cpeptide was 1. that level at the same time as a high blood sugar 2. decreased from the last test. I believe the common theory is that some people had the autoimmune attack but don't test positive because it was a while ago and somehow they don't stay detectable but I'm not sure if that's the best way to phrase it other than it kinda makes sense.

Regardless, I do think you should go on insulin, even if you do it in small doses at first to try it it out, though if you're a type 2 small doses will likely not be all that much for you. I was misdiagnosed as well (though I eventually got typed as 1 due to how I responded to insulin more than anything else) and it was a miracle worker for me. I went from feeling like crap and not wanting to leave my bed, to feeling amazing, all like after one or two doses of lantus and some novolog.

Thanks Brian.. I do watch my carbs. I know what is in everything I eat right now and it is the same stuff all the time (easier to eat the same things all the time that way you don't have to recount).. So I have a relatively close number of the carbs I eat at each meal and snacks.. So I am sure I will be OK. Exactly how accurate do you have to be with the carb counting?? Like if do you have to figure out little bits of tomatoes on your taco for example? Or do you just try to get as close to the carb number as you can?

Wow! Thanks! That was very helpful. I think I WILL get the MODY test. My dr told me where to do to get it (Athena Diagnostics). I am trying desperately to get my old c-peptide.. I can't get the clinic I was diagnosed at to answer me back!!! It is up in Milwaukee other wise I would just drive there... grr.. Frustrating!!!! It is a low cost clinic so it is difficult to get people to answer back messages from that place.. The results MIGHT be in labs from my other clinic and they are sending me a release form so I hope it will be in there! Yes I am curious to see what it was as all the dr did was give me a number (can't be sure now but I think it was 7 but I never knew the lab ranges) he just said I still mad a lot of insulin.I will keep trying to get the records..

I hope I do as well on insulin like you did.. I can get around but I am exhausted a lot of the time.. Like I have no strength or energy to pull me anywhere.. It is exhausting. My dr said there is no guarantee in that but listening to everyone on here I have a lot more faith in this than I do in Januvia or metformin fixing my numbers anymore.. And since I can't seem to fix them right now no matter what I do - I am just gonna eat more.. Starving myself isn't working so I might as well eat and I do feel a bit better now cause I am eating a little more.

It would make sense if we have no insulin to convert food into energy how would we have any right? I did read (even on here) that many Type 1 never test positive for antibodies.. I think the drs should just go by the c-petite and BG numbers and treat based on those..

Great that your doctors are on top of this. Best of luck KitKat in your search for the best treatent.

I go for my CDE appt on Feb 5 ... gotta wait a whole week ugh.. things go so slowly.. But at least i am getting somewhere... Trying to hold on. :)